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Monday, 20 August 2012

The adventures of someone who doesn't really know wtf is going on. - An update post.

Well
what a few months it's been. Highs, lows, but most importantly the
highs heavily outweigh the lows making them seem not so bad at all.

A
lot of big things have happened, my MS (which I shall go into later),
driving lessons going great considering all the set backs I've had
with MS, The Avengers, and let's not forget the discovery of the
Higgs boson. All this of course with my hero by my side.

So,
my MS. Yes that little fucking doozy. After some spectacular lows and
serious medical issues such as being allergic to Betaferon and nearly
dying, I've now reached a sort of stable period. I had an awful
relapse in June but got over it so quickly thanks to fantastic
support. I was allowed to rest, was waited on hand and foot, I felt
like a complete princess and even though I was in tremendous pain I
was being made to smile all the way. It took a while for me to get
used to as I had never had that before. I had to suddenly become very
accepting of the help I was getting no matter how alien it was to me.
Within a few weeks I was back to myself and I don't think I can ever
describe how grateful I am.

Since
then I have started taking Copaxone, a daily injection of disease
modifying drug. It was the only one I had left to try as the rest are
interferons which as we no know would kill me. It was all gravy until
about 2 weeks in and then I started having the most awful site
reactions. No other side effects what so ever, but these reactions I
started having to where I injected myself were bloody awful. It's
normal to have itching and a bit of redness the day after your
injections but these were huge welts, unbearable itching, bruising,
just not very nice at all. I have been on it for about a month and a
half now and the reactions are getting less so hopefully like most
people on the same drug, it is calming down back to normal. I started
to change things like how/when I injected and using the cool pack.
Also, taking Piriton in the evenings but I rarely take it as by that
time of the evening I'm bushed and usually forget. I still have these
'knots' of tissue where I inject but they aren't last as long either.

My
main problem aside from the itching being bloody terrible, especially
in this heat, is that I was running out of space to inject myself.
You can't inject anywhere near where you're swollen, red, itchy etc.
so I was in trouble. My nurse suggested on Friday that as the
reactions were starting to go down that I come off it for the weekend
and start again Monday (today) to and clear some space for
injections. It's been really strange not injecting myself of an
evening, didn't feel right at all so can't wait for tonight...in the
best possible way of course. I'm not going to lie and say that it's
easy, it's bloody painful, but I do believe it's doing me some good.
Take a couple of weeks ago for example.

One
day my sight started to go out of the blue, but it wasn't my normal
Optic Neuritis. Normally over a longer period I would develop a
blurry patch in my vision in both my eyes, which would grow and then
go completely blind in the middle of my vision. This was different
because it was just a tiny blind spot. Literally a spot in the middle
of my vision, I probably wouldn't have noticed it if I didn't
constantly compare my vision daily. It lasted a few days and then
came the searing pain in my hips. Again, normal relapsing behaviour,
but instead of it coming in a couple of weeks it was days. A few days
later it had completely gone and my sight was back to normal. I put
it down to an odd niggle, but then I started going through my
recovery procedure. I guess one good thing about having so many
severe relapses since November 2011 (June's relapse was my 7th)
is that I know my relapses, the stages and how they behave. My
recoveries are sleeping a lot and eating constantly. So in the space
of less than a fortnight I had gone through what would usually be a
month long. I spoke with my nurse and she told me that it was just a
little relapse that didn't require steroids. Good news, as she then
told me that taking a course of high dose steroids more than 3 times
a year can be dangerous, and I had been on 7 in 8 months.

So
now I know what a little relapse is like for me. Was it down to the
Copaxone? Possibly and I sure hope so. As I was due a relapse (I seem
to recover and then relapse straight away) so if they are now all
going to be like that then huzzah!

That's
enough of my MS for a bit I think, let's talk about some diet and
fitness things shall we?

My
diet has been all over the place but still a lot better. It's very
hard to eat right when sometimes your body just needs to be fuelled
and you don't have the time or energy (or money) to fix up something
super healthy. BUT. But my little pedigree chums, I have lost more
weight and still going down. It's slow but it's noticeable, and the
other day I actually ordered jeans off the internet and they fit like
a dream, something I haven't done since my Australia days all those
years ago. It's filled me with confidence and makes me feel that even
though I can't go nuts with my exercise like I used to, I'm still
doing something and it's working. Speaking of exercise I'm starting
to wean myself back into it. I'm being very good and not over doing
it, hopefully by September I can move up from Shreds and Turbos to a
modified P90X which is entirely possible. Fingers crossed.

And
now an apology, my videos have kind of taken a back seat lately. A
combination of being so busy but mostly due to the fact that I just
haven't a clue what to talk about. I get a lot of suggestions from
people wanting me to do things such as sciencey type videos, cooking,
beauty (lol wut) funny vlogs and other things but I just don't know.
I'll have a think about it and get back to you.

In
the meantime Kookskis make sure you eat your greens and I'll check
back in soon, ciao!